2001 Developmental Disabilities Assessment


 

V. MENTAL RETARDATION/DEVELOPMENTAL DISABILITIES SERVICE DELIVERY SYSTEM

A. INDIVIDUALIZED PLANNING AND ASSISTANCE B. EARLY CHILDHOOD INTERVENTION SERVICES
C. FAMILY/CARE GIVER SUPPORT AND RESPITE D. GUARDIANSHIP
E. CHILD CARE F. SUPPORTED LIVING SERVICES
G. CRIMINAL JUSTICE H. LONG TERM CARE
I. TECHNOLOGY J. MENTAL RETARDATION LOCAL AUTHORITY

An array of services and supports are designed to assist people and their families with mental retardation and developmental disabilities in Travis County. These specialized services are offered through public and private providers and include segregated and integrated opportunities. Overall, service providers seek to address the individual requests of people with MR/DD. Providers may focus on specific needs such as:

  • employment
  • daily activities
  • specialized support and assistance
  • family support and respite
  • early childhood intervention

Other service providers are larger and more comprehensive in approach that target people with specific disabilities such as autism, mental illness, cerebral palsy, and/or the priority population as defined through the Texas Department of Mental Health Mental Retardation (TDMHMR).

TDMHMR's priority population for mental retardation service consists of individuals who meet one or more of the following descriptions:

  • Persons with mental retardation as defined by the Texas Health and Safety Code Section 591.003.
  • Persons with pervasive development disorders, as defined in the current edition of the Diagnostic and Statistical Manual (DSM), including autism.
  • Persons with related conditions who are eligible for services in Medicaid programs operated by the department, including the Intermediate Care Facilities for the Mentally Retarded (ICF/MR), Home and Community-Based Service (HCS), Home and Community-Based Service - Obra (HCS-O) and Mental Retardation Local Authority (MRLA) programs.
  • Nursing facility residents who are eligible for specialized services for mental retardation or a related condition pursuant to Section 1919(e)(7) of the Social Security Act.
  • Children who are eligible for services funded by Early Childhood Intervention Interagency Council.

Over the last 10 years there has been an increased emphasis on the need for local service providers to collaborate and coordinate their efforts. Long waiting lists and limited resources have prompted the development of local partnerships in order to maximize funding, meet the demand for services, and advocate more effectively. The Mental Retardation/Developmental Disabilities Planning Partnership (MR/DDPP) is a team of stakeholder representatives meeting regularly to plan, assess, and share collective knowledge to promote healthy and meaningful lives for people with mental retardation/developmental disabilities. The MR/DDPP has documented local services for people with developmental disabilities into an inventory map (Table 5) of local providers and the services they provide. The development of the inventory map has assisted in identifying gaps in local services. The Developmental Disability Inventory Map represents many disability related services in Travis County.

Table 5.
Travis County Developmental Disability Inventory Map 1

Table 5 Continued.
Travis County Developmental Disability Inventory Map

Table 5 Continued.
Travis County Developmental Disability Inventory Map

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INDIVIDUALIZED PLANNING AND ASSISTANCE

Information; screening and referral; eligibility and enrollment; and service coordination (case management) are individualized services required throughout the MHMR state and community MHMR systems. Service coordination is an essential function within the state and local system as the assigned single accountable staff person who has the task of helping the consumer to discern needs/requests and resources/services and is required for comprehensive rehabilitation program certification. Before services may be arranged, individual planning must occur. Person-directed planning, also called personal futures planning, assesses the strengths and capacities of the person and is a best practice model that replaces the traditional approach of focusing on problems and weaknesses. Using this approach, the personal goals and desires of people with mental retardation and developmental disabilities are identified and used to select and drive individual services. The principles of self-determination are another example of best practice service utilized throughout the nation that focuses on freedom and choice. Person-directed planning is a planning method that connects people to their communities and develops relationships. With the utilization of person directed planning the need for additional individual support services will be necessary (ATCMHMR, 1996).

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EARLY CHILDHOOD INTERVENTION SERVICES

Early Childhood Intervention (ECI) programs are designed to serve families who have children, from birth until the age of three, who are experiencing some type of delay(s) in their growth and development. In keeping with federal guidelines (Part C of IDEA- Individuals with Disabilities Education Act, passed by Congress in 1975), parents and/or guardians of the child are engaged as active team members in deciding what is needed to best support the child and family. Parents and families take lead roles in planning goals and making decisions about the therapies and activities that will affect their child's life. Family-centered planning, like person-directed planning, looks to the preferences and needs of each child and their family (Infant Parent Program, personal communication, May 2001).

A variety of ECI services are available and may include physical, occupational, respite, speech therapy, social work, service coordination, and early intervention teaching in home, day care, and other community settings depending on the needs and activities of the families. People with developmental disabilities, who begin life with early childhood and family supports, are more likely to have higher expectations of themselves, as will their family members. ECI services are able to impact individual conditions and family issues before needs become more complex. Infants in need but unable to access early intervention services may experience greater developmental delays. Early intervention must begin by the time children with disabilities are 2-3 years of age to capitalize on the developing brain's capacity to be sculpted (Infant Parent Program, personal communication, May 2001).

Each year, a number of children with disabilities receive ECI services from one of three providers in the Austin area (Chart 7). The Easter Seals-Central Texas served over 500 children and their families in FY 2000, the Austin Travis County MHMR Infant Parent Program averages 425 children each year, and Any Baby Can served 246 in FY 2000 (MR/DD Planning Partnership).

Transitional supports are available for families and their children who are exiting ECI services. Families are educated about the availability of choices in their community, including opportunities in public schools. It is important to note that if a child meets a school district's eligibility criteria, the district is required to provide services, but not necessarily in a school setting. Family support services, including respite and caregiver services continue to be a critical need.

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FAMILY/CARE GIVER SUPPORT AND RESPITE

Family and caregiver training and support, also a core service requirement, is provided for primary care givers when the person with mental retardation and developmental disabilities lives in his or her family home.

In 1995, the demand for respite services in Texas exceeded services by 1425 percent.

CAN, 1995

Another related and core service is respite care, which may be any service, or program that provides care for a person with a disability while the caregiver is engaged in some other activity. Respite services may be community or facility-based depending on the needs of the person and the family/caregiver. Services may range from basic but specialized caregiving to therapeutically managed day camps with licensed professionals.

Down syndrome is a major biologically-based cause of mental retardation affecting approximately one out of 800 infants born each year in the United State. In a study involving stress in the parenting of children with Down syndrome, parents from similar social and economic situations perceived more caregiving difficulties and child-related stress (distractibility, demandingness, unacceptability), and parent-related stress (incompetence, depression, health problems, role-restriction) than parents of typically developing children (Roach, Orsmond, & Barrat, 1999). Parents of young children with Down syndrome, like parents of children with other disabilities, face challenges that may profoundly affect their family's ability to cope and the amount of long-term support their children will ultimately need from their communities (S. Miller, personal communication, May 2001).

The Family Support Cooperative (Coop) is a collaboration of Austin Independent School District, Austin Travis County Mental Health Mental Retardation Center, and The Arc of the Capital Area. The Coop provides support groups, educational seminars, and training to families who care for children with a disability or chronic illness. Meetings are held every Wednesday night during the school year from 6:30 p.m. to 8:30 p.m. at the Rosedale School (S. Eason, personal communication, June 2001).

In 1995, the demand for respite services in Texas exceeded services by 1,425 percent (CAN 1995). In 1997, The Arc of the Capital Area's Kristen's Fund, sponsored by The Arc's Pilot Parent Program, was able to fund only two thirds of the Austin families who qualified. In 1999, the Pilot Parent Program served 3,500 families in services that matched families with similar needs, provided information and referrals for resources, hosted parent meetings and workshops, provided special education assistance and offered other parent support activities (The Arc of the Capital Area, personal communication, March 2000).

The Community Resources and Information for Special People (CRISP), a parent organization locally serves thirty to fifty new parents a year. Begun as a grassroots effort, CRISP now hosts monthly parent meetings and provides speakers on topics such as Social Security, Medicaid, genetics, legal issues, and guardianship (CRISP, personal communication, March 2000).

Easter Seals-Central Texas offers therapeutically managed day "camps" for 30 children each summer as a respite option. The social and recreational curriculum has been developed by a licensed occupational therapist who also trains volunteers to work one-on-one with each child. In 2001, Any Baby Can, a local bank, and private donors provided scholarship support to camp enrollees with household incomes under 200 percent of poverty (S. Miller, personal communication, May 2001).

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GUARDIANSHIP

In some situations, parents and caregivers may need to seek guardianship of their family member. Many people with developmental disabilities do not require a guardian to make decisions on their behalf. However, guardianship is a legal process designed to protect vulnerable persons from abuse, neglect (including self-neglect), and exploitation.

Currently the Travis County Guardianship program at Family Eldercare serves 77 persons with developmental disabilities. This represents approximately 44 percent of the agency's active Travis County guardianships.

Family Eldercare

State law does require each county in Texas to locate a guardian for any incapacitated person who comes to the court's attention. Affecting the demand for guardianship in Travis County is (Texas Guardianship Association, 2000):

  • increasing population
  • increased life expectancy of persons with developmental disabilities
  • increasing awareness of care providers of the obligation to provide informed consent to a person before providing services

Currently the Travis County Guardianship program at Family Eldercare serves 77 persons with developmental disabilities. This represents approximately 44 percent of the agency's active Travis County guardianships. Family Eldercare also has a waiting list of 30 people, 21 who have been identified to have developmental disabilities. Additionally, the Austin State School has identified 140 residents who are in need of a legal guardian. The process of applying for the guardianship can be costly and time consuming for many families (J. Haight, personal communication, June 2001).

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CHILD CARE

Autism Technical Support Services provides training for staff and children at child care centers to increase information and comfort levels in caring for and interacting with children with autism through their Inclusive Child Care Task Force. Their November 1999 conference had over 100 child-care providers in attendance. They are currently discussing an expansion in this training to encompass children with other disabilities due to the need for further training of childcare providers (Autism Technical Support Services, personal communication, April 2000).

SUPPORTED LIVING SERVICES

Supported living services individually assist people with mental retardation and developmental disabilities in their home and community environment. A variety of supported living services exist in Travis County. Requests far exceed available resources for support staff, services, and the supply of affordable and accessible housing. Some of the services and programs described below are also provided through private for-profit agencies not included in this summary.

ATCMHMR operates a variety of programs. For persons with mental retardation, options include group living residences, supervised apartment living, and family living support. For persons with AIDS, HOPWA (Housing Opportunities for Persons With AIDS) exists. Chemically dependent adults may find assistance in the Oak Springs facility, and people who are homeless can turn to Safe Haven. For persons experiencing mental illness, a Housing Coordinating Team exists to help find housing resources such as The Inn. ATCMHMR also offers the In-Home Support Services program to support clientele living in the community.

Bill Paying services are an important service to keep living situations intact. Without budgeting and bill paying assistance clients often lose housing, don't receive needed services due to payment problems, or are at risk for being exploited. Family Eldercare is the only provider of bill paying and representative payee services to persons with MR who are low income. No fee is charged. This service is an alternative to guardianship or more restrictive placements. Almost 50 percent of consumers are referred from ATCMHMR.

AIDS Services of Austin operates several group or congregate facilities for their clientele as well as supporting persons with HIV/AIDS in their personal homes or apartments.

A variety of boarding homes may also be an option for persons with disabilities to live in the community, but these boarding homes are not licensed nor are they regulated, so any assistance available for daily living supports will vary from home to home and possibly from day to day.

Other supported living services vary in terms of the population served and the level of support provided. These include the Marbridge Foundation for persons with mental retardation, and the Texas Commission for the Blind for persons who have visual impairments. For persons with hearing impairments, resources include the Texas School for the Deaf, Travis County Services for the Deaf, and Vaughn House.

For persons with mental retardation and other developmental disabilities, a number of options exist including the Mary Lee Foundation, the Independent Living Services Program (ILS) with Texas Rehabilitation Commission (TRC), In-Home/Family Support and the CLASS Program with TDHS, Empowerment Options and Disability Assistance of Central Texas.

Additional community living programs do exist. Although their primary population does not, by definition, include persons with disabilities, it is possible that someone with disabilities could utilize these services. These programs include agencies such as LifeWorks for Youth, ACCESS Homeless Services, the Salvation Army, Blackland Transitional Housing, Housing Authority of the City of Austin, Travis County Housing Authority, South Travis County Emergency Services, and others.

A number of agencies also provide training to learn independent living skills for a variety of populations. These include The Arc of the Capital Area, ARCIL, TRC-ILS, LifeWorks, NOW Services, Travis County Services for the Deaf, and Disability Assistance of Central Texas (DACT).

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CRIMINAL JUSTICE

In the spring of 1995, the Texas Department of Criminal Justice (TDCJ) became the largest prison system in the world with 117,000 men and women incarcerated. The total does not include people on parole, probation, in state jails, boot camps or private prisons. In 1995, the number was projected to increase to 156,000 inmates by 1996, with a minimum representation of 15,600 people with mental retardation incarcerated. As a result, the cost to taxpayers would be a minimum of $468,000,000 as opposed to $140,400,000 (Chart 8) if appropriate diversion and community supports had been utilized (Arcil, Inc., 1996).

Crime against victims with developmental disabilities often goes undiscovered. Suspects with mental retardation, whose condition is not discerned, may experience a perpetual and never ending cycle in and out of the criminal justice system. Unknowingly, the justice system fails to provide people with mental retardation with the due process afforded general society.

SafePlace provides a comprehensive array of sexual assault and domestic violence counseling and prevention education services for persons with mental retardation, developmental and other disabilities. Counseling services are available for Travis county residents who have experienced sexual, domestic, or caregiver abuse. Counseling is designed to promote healing, explore safe options, and provide education to reduce the risk of future abuse. SafePlace also provides children, youth, and adults with disabilities with education focused on preventing violence, assessing potential risks of abuse, safety planning, reporting abuse, and acting as powerful self-advocates (W. Abramson, personal communication, June 2001).

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LONG TERM CARE

People with mental retardation and developmental disabilities may need life long services, supports, and care. Defined in statute, long term care means "the provision of health care, personal care, and assistance related to health and social services over a sustained period to people of all ages and their families regardless of the setting in which the care is given."

The FY 2002-2003 draft of the Long Term Care Plan for People with Mental Retardation and Related Conditions by the Texas Health and Human Service Commission (THHSC, 2001) discusses and identifies several goals and initiatives, including cost status and funding strategies. It emphasizes the significance of waiting lists as critical planning tools for the TDMHMR system. A major initiative of the Citizens' Planning and Advisory Committee (CPAC) is to evaluate what happens to a person while he or she is waiting for services.

Certified outpatient clinic facilities have been established as single sites with the capacity to develop and deliver integrated Plans of Care for children and adults with disabilities that are person/family centered and strength based. These long-term care programs provide services that include, but may not be limited to:

  • Therapeutic, medically prescribed intervention (physical, occupational, speech and language therapies and social work)
  • Pyscho-social counseling
  • Family intervention and support
  • Resource management
  • Interagency coordination and service integration
  • Transition planning and assistance
  • Therapeutic day activities and respite that enhances family and individual functioning, community integration and respite support
  • Equipment and assistive technology needs assessment and linkage

When planning for long-term care, trends in mental retardation and developmental disability services must be considered. The Texas Health and Human Service Commission describes three significant movements that are affecting quality of life and the way long-term care is applied. These include (THHSC, 2001):

  • The evolution of self-determined service systems throughout the United States is expanding. New practices are being introduced that ensure services and supports are individually tailored and controlled by the person with developmental disabilities and their family. Core practices are emerging which promote individual budgeting, personal brokerage and case coordination roles, power sharing and system governance and consumer education and training.
  • A reduction in larger Medicaid-funded congregate care facilities is occurring. In six of the ten largest states, the number of consumers transitioned to small community-based residential settings has been greater than 50 percent.
  • Initiatives to reduce waiting lists using state funding are being driven in part by pending litigation seeking federal court intervention to require the states to offer Medicaid funded Intermediate Care Facilities for the Mentally Retarded (ICF/MR) or Home and Community Based waiver services to all eligible individuals with developmental disabilities on waiting lists.

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TECHNOLOGY

For people with mental retardation and developmental disabilities, advances in communications and other technological opportunities can be used to increase their ability to relate to others and greatly improve individual quality of life outcomes.

Assistive technology can support people at work and home to manipulate the environment and perform tasks they might otherwise find difficult or impossible and to increase their ability to relate to others. Educational opportunities are expanding by the use of new technologies. Safety devices and other systems help to make independent living more within reach.

Technologies are helping to increase individual mobility and to correct certain medical and physical conditions that were not easily addressed in the past. Technology has already evolved to the level that augmented communication and assistive technology systems are making communication, environmental control, mobility, and access integrated into one system.

High tech is particularly helpful for employees with visual disabilities interested in computer-related work. Cara, who is blind and hard-of-hearing, was hired at the Hyatt Hotel as a reservation specialist through the Austin Supportive Employment Rehabilitation Technology (ASERT) program. Texas Commission for the Blind worked closely with the Hyatt to develop adaptive technology. Cara uses one headphone to talk to the customer, and one headphone to listen to her talking computer.

Without technology - ranging from high tech to extremely low tech - many people with disabilities would not be working today. One woman in the ASERT program at Disability Assistance was hired to be a reservations operator for state parks at Texas Parks and Wildlife. Because of the high volume of calls, speed was critical. This particular woman has spastic cerebral palsy in all of her limbs and uses a wheelchair to get around. Because her lower legs are less affected than her arms, she uses her feet for many of her daily activities, including typing. Unfortunately, her workspace could not be altered, because it was needed for reservationists on other shifts. The solution? A chair that elevated her high enough above the keyboard so that she could type with her feet.

A Braille readout at the bottom of her keyboard lets her know what she has entered into her computer fields. She also uses a Braille note-taking devise that she converts into Microsoft Word documents for her boss. Her supervisor has commented that she makes more reservations working three days a week than other employees do five days a week.

Other solutions involve more creativity than expense. Pizza Hut hired two young men -brothers - through the ASERT program. Their job was to fold pizza boxes, but they lacked the fine motor coordination to do the job without assistance. An anchored frame to help fold the boxes was developed through the efforts of ASERT staff, Texas Commission for the Blind, and Pizza Hut. The two brothers who pioneered the adaptive aid are doing well at their jobs, and the frame is destined for implementation in pizza restaurants across the nation.

The Texas Rehabilitation Commission (TRC) and Disability Assistance of Central Texas (DACT) operate technology libraries in Travis County. The TRC library has a variety of adapted equipment that people with disabilities may see and "try out" on site. DACT operates the Liberation Station, a technology and toy lending library. As in the usual concept of a "Library," clients may borrow equipment for a limited amount of time, usually two weeks, to see if the equipment is an item that would be useful for them to purchase. Inventory includes computers, software, toys and games, enabling the library to serve as a resource for clients of all ages.

Liberation Station has expanded its services to include a computer lab in which computers are programmed with a variety of adaptive software. Clients may receive software training tailored to their specific need and disability. Programs such as Capital Idea and Empowerment Options also offer computer training.

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MENTAL RETARDATION LOCAL AUTHORITY (MRLA)

In 1998, Austin Travis County MHMR Center's Mental Retardation Services began to transition from an independent service provider into a Mental Retardation Local Authority (MRLA) and managed care system. As a result, people who qualify for services under priority population guidelines became able to choose and access other local providers, including internal provider services, using Medicaid waiver dollars. Under this new arrangement, a voucher program for purchasing employment and day activity services was also implemented using General Revenue funds as an additional way to offer flexibility and choice in service providers. However, many people with developmental conditions do not meet the criteria to participate in the MRLA system. For more information regarding Travis County's Local Authority, see Appendix B.

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Assessment Home


1. The Inventory Map is not intended to be inclusive of all supports available to community members and does not include providers who did not offer input. It should be noted that respite services are included under family support and the advocacy heading includes personal safety awareness services. It is further divided into two broad categories representing community based and state agency services. As table 5 reflects, a number of services are available in the community, various eligibility criteria and funding mandates limit access and availability of services to all in need. For example, there is a number of Medicaid waiver services managed through various state agencies (deaf/blind, CBA, CLASS and MRLA). Each has different eligibility criteria and extensive referral lists that represents unmet service needs. To inquire about specific services, contact United Way Capital Area's First Call for Help at (512) 324-1899.